From the Beginning

After a couple long years of health problems, we had mostly accepted that it was unlikely I would be able to carry another child, so the news that we would have another of our own was breathtaking! We had struggled through a few years of sickness, doubt, and marital strife, and felt that this brand new life was a symbol of the healing and restoration that God had lavished upon us. We put our adoption plans on hold and eagerly began preparing to welcome this new little blessing into our lives.

When we learned we were expecting a girl, we chose the name Ellianna, which means “God has answered,” and Grace for her middle name, which means “God’s unconditional love and unmerited favor.”

After giving birth to my youngest daugher at only 30 weeks, we wanted to make sure this pregnancy went smoothly and was carried to term. My doctors did not seem overly concerned though, encouraging us that everything looked fine.

Things were uneventful until March 2nd, 11 weeks before my due date. I went into premature labor hard and fast, and by the time we arrived at the nearest hospital, Ellianna and I were both losing lots of blood from a placental abruption. It was only minutes before they whisked me off for an emergency c-section, and Ellianna’s tiny little face was held up for me to see. Frightening as it was, she was almost the same gestation as our other daughter had been, and we had every confidence in God and the NICU staff to bring her through safely, just like her big sister.

This NICU stay was different though. There were many hiccups along the way. Trouble with breathing, trouble with feeding, trouble with bleeding in her tiny little head. When the brain bleeds were discovered just a few days after birth, there was not a lot of concern. They would keep monitoring her head size and perform frequent ultrasounds to watch for it to resolve on its own.

Then… it wasn’t resolving and the pressures in her head kept going up. The pediatric neurosurgeon was called, just to have a look. He didn’t seem worried at all. He said nothing needed to be done. Call him back if anything changed.

Then… it got worse instead of better. The neurosurgeon came back. He said yes, there was a problem, but it would probably get better on its own, “statistics showed.” I will never forget when he looked at us and said, “chances are less than a coin toss that she will ever even need surgery for this.”

A coin toss. And then we were being transferred to another hospital so that she could have the surgery she needed to place a shunt to relieve the pressure in her brain. Brain surgery. My tiny, tiny little peanut, and we were handing her over to have her fluffy brown hair shaved and her fragile little head cut into to save her life. That day I thought that was the hardest I would ever cry.

It was temporary. A temporary shunt to relieve the pressure and let her brain recover. Her surgeon encouraged us that many children improve on their own after this and never have to have a permanent VP shunt. We were hopeful. We worried about a lifetime of surgeries and possible complications, but we hoped that was not for us.

Ellianna fought. She pulled out her own feeding tube and decided she would eat all on her own, like a big girl. She gained weight, she turned pink, she was weaned off of her medications and didn’t require any more blood transfusions. She showed signs of cerebral palsy, but she faithfully did her physical therapy every day, and she showed us she was ready to join the rest of the family at home.

Two days after Easter, we brought our baby girl home to begin the rest of her life. There was so much joy! Every room in our house filled with the scent of new life, the sound of hope, and the light of courage and faith. This little tiny person was a very tangible reminder of the healing our whole family had received. We were captivated by her.

We threw a welcome home party for her, we fought for turns to hold her, we celebrated Mother’s Day and Father’s Day, and made a family trip to Disneyland and the beach with our tiny little girl.  After a few glorious weeks home though, she started showing signs of trouble. She was hard to console, she wasn’t eating well, and her head circumference was growing quickly again. When we took her back to the neurosurgeon, he told us her shunt was no longer helping and she would need a permanent one. We were crushed, but knew this was one more thing we needed to face to give our daughter the best chance she had. Because there was still so much blood in her brain, she was not able to receive the permanent shunt right away. She had surgery to provide a temporary fix while we waited until she was well enough for the permanent one.

Finally the day came when she was to have one last surgery. A permanent shunt to regulate the pressures in her head. Something she would live with and possibly have to have adjustments in her future, but an end to the unstableness for now. Although this was the biggest and most invasive surgery so far, we were relieved that this was going to be the end of her surgeries and discomfort for awhile. We were eager to get her feeling better so she would be stronger and make more progress with growing and with the therapy she was receiving to lessen the effects of cerebral palsy, and whatever else the brain damage had caused. We were ready to support her and love her no matter what shortcomings the world told her she had.

It was tough to see her in so much pain after that surgery, but every day was a little bit better and soon she was home and happy and wearing her pink fluffy dress.

A few weeks after surgery, we expected to see more improvement than we were seeing. I was having a harder and harder time getting her to eat. She fussed all the time, and only wanted to be held close. Her doctors kept telling me I just needed to feed her more. I couldn’t imagine how every 3 hours around the clock wasn’t enough, and it didn’t seem to matter since she was taking less and less of what I offered anyway. My gut told me something else was wrong, but every time I took her in, I got the same answer.

Wednesday, July 13th was the day the doctors finally listened, and Thursday, July 14th was the day our Ellianna Grace took her last breath here on Earth. (You can read more about that day by clicking here).

What started out as a blog about our road through adoption has evolved into a story of unexpected change, joy, grief, healing, and hope as we face a journey we never saw coming.  It has taken more plot twists than I ever could have imagined, but being able to write what is on my heart has helped me learn and process and grow, as well as given me a community of understanding friends that have helped me navigate the ever-changing road in front of me.  It’s not always a pretty story, but it’s my story, and I’m living it out the best I know how.

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